Perceptions of People From South Asian Backgrounds With Chronic Kidney Disease on Digital Health Interventions: Patient and Public Involvement and Engagement Consultation Focus Group.

introductionDigital health interventions (DHIs) are increasingly popular as a potential method to address educational and support needs of individuals with long-term conditions, as they are largely accessible to most people, can be highly effective, and delivered at low cost. We have developed a DHI to better support chronic kidney disease (CKD) self-management and demonstrated its efficacy in a UK-based clinical trial. The trial population, however, was fairly homogeneous, and those from underserved populations (including ethnic minority groups), who would have likely benefited from the DHI, were underrepresented. Understanding how ethnic minority communities perceive DHIs is essential for identifying their needs, priorities and challenges, and for ensuring that future DHIs are relevant, acceptable and equitable. Given the potential impact of DHIs, patients should be actively involved in their design and implementation. To support this, patient and public involvement and engagement (PPIE) consultations were conducted to: 1) understand people with CKD from South Asian (SA) backgrounds' perspectives of DHIs; 2) identify factors that require consideration when adapting DHIs to address health inequities; and 3) clarify how best to conduct PPIE projects in adapting DHIs for traditionally underserved groups, particularly ethnic minority groups.

methodsPPIE consultation focus groups were conducted in-person with ten individuals (60% male, age: 69 ± 7) from SA backgrounds thrice, audio-recorded and transcribed verbatim. Data were analysed using thematic analysis.

findingsParticipants identified several barriers and facilitators to accessing and using DHIs. Language was reported to be the biggest barrier to accessing and using online health information. Having culturally appropriate information available in their own language would increase the acceptability and uptake of the DHI among SAs. Not making assumptions and being respectful about individual choices, cultural or religious beliefs, was considered key to engaging people. Promotion by a trusted person (doctors, peers, community leaders) was perceived to help alleviate the fear of DHIs and improve uptake and usage.

conclusionPeople from SA backgrounds are open to using DHIs, but they need to be available in their own language and be culturally appropriate. The findings will be used to adapt our CKD self-management DHI to better address the needs of those from SA backgrounds. PATIENT OR PUBLIC CONTRIBUTION: Patients and members of the public were directly involved in the participation of the patient and public involvement and engagement (PPIE) consultations. Community engagement officers from the Centre of Ethnic Health, who were from South Asian backgrounds, were involved in the PPIE consultation, recruitment, development of a semi-structured focus group guide, and facilitation of consultation focus groups.